We had our first ultrasound on September 19, 2012 – the day we found out that everything was not OK.

While an ultrasound uses sound vibrations to get an image of babies inside their mummies, these sound waves crashed into the depths of our lives and reverberated throughout the universe in a spiral until it came to a deafening halt on September 28. We’re now trying to pick through the rubble and aftershock.

We had no idea anything had been awry during my pregnancy – no false contractions, bleeding, or anything else – just a regular, easy pregnancy to date that brought us a lot of joy.

During our first ultrasound, we were, at first, elated. It was our first time seeing our child. We found him to be the most beautiful little baby, and we were so proud.

Unfortunately, this and the feelings of him kicking and wiggling from the inside will be our only memories of him.

The doctor informed us that our little boy’s limbs were really under-developed, and his skull was too large for what a typically growing baby at 20 weeks measures. So much so that they actually pushed my due date back a full month. We were then handed over to St. Justine’s Hospital in Montreal to see a genetic specialist, but we had a few days to wait before getting the phone call that would confirm our appointment.

For the next few days, I was a zombie. I cried nearly constantly, and only ate for the benefit of the baby, whose diagnosis we had yet to learn. We had no idea what could be wrong, and tortured ourselves by Googling what he could possibly have. The doctor speculated that it could be thanatophoric dysplasia, or one of many forms of dwarfism.

I forced myself to think positively for a few days – what could it hurt? I was dismayed at the challenges our child would experience at being different, but anything was better than hearing a death sentence for our unborn child. But we were not so lucky.

Finally, our appointment to see the genetic and fetal bone-formation specialists at St. Justine Hospital came. We sat around nervously waiting to hear if we could get a diagnosis so that we could either stop worrying, or, at absolute worst-case scenario, be faced with a tragically difficult decision.

Our ultrasound doctor – who was also our fetal bone growth specialist doctor, was simply fantastic. She said she would go piece by piece, organ by organ, and see if she would be able to let us know why we were there. Not long after investigating, she was able to definitively diagnose our son. It was the worst news we could possibly hear. She said that our son had osteogenesis imperfecta type 2a. It was fatal, and she was very sorry.

His bones had not been growing properly because they kept breaking – even in the safest place for him to be, in my squishy womb. But we couldn’t even protect him from harm in there. Ater we left, four specialists met to go over the results of our ultrasound, and they unanimously agreed that he had this deadly disease. His ribcage wasn’t growing in a way that would protect his lungs, and, because ears were made of bones that let us hear, he was also likely deaf. If we carried him to term, the birthing process would re-break every bone in his body, even with a gentle C-section, and he would then die of respiratory or heart failure. We wouldn’t even be able to hold him to comfort him when he cried.

Through the fog, we made the decision to terminate our pregnancy. We had two last days with Henry, and I savoured every kick, blip and wiggle he made.

On our last night with Henry, I felt like I was going mad. I DID NOT want to go through with the procedure. I didn’t want to say goodbye to my son, who was still very much alive and kicking inside me.

It was torture, madness, against every fibre of my body, against my instinct as a mother – to love and protect and cherish my little one. It was against my belief in giving everything I had – of not giving up, of finding solutions, of getting support and help, of helping those in need. I was diving in to a situation where, to let myself go through with it, I had to turn myself off.

The only thing that helped me through these horrible few days was that we learned that doctors suspect that a fetus doesn’t feel pain until the 22nd-24th weeks of pregnancy. We tried to see it as our only gift to Henry – that we were stopping his life before the neural connections that let you feel pain were fully developed. And at 21 weeks, we were right at the cutoff point. Of course there is no way to know for sure, but this knowledge, even if it’s just suspected, gave me a great deal of comfort. As Henry’s mom, this was the only way I could protect him. But I still have to work very, very hard to convince myself that it was the right thing to do. I didn’t cry during the procedure that forced my son out of me. I wanted to be strong for Henry, and deliver him so that he could be free.

We lost our child before we got to know him. We’ll never know what he would have looked like, sounded like, what foods he would have preferred, what hobbies he would have picked up, and the relationship he would have had with this step-brother. But we miss, love, and honour him every day.

Comments

I am sorry you were faced with such a difficult loss mama. It’s so heartbreaking, but as Henry’s mom you did everything you could for him. I pray that you can be comforted during this tragic loss. Hugs to you and your family.

I’m so sorry. My heart breaks for you having to make that decision. You did the most selfless thing you could, sparing your son the pain. He’s going to watch over you forever and you’ll see him again. Bless you.

I fully believe without question that ending his life, painfully, was worse than delivering him at term, painfully. My heart breaks for this child who was ripped from his mother’s womb and never allowed a miracle, the possibility to heal before birth or to live until his life was meant to be over. I wish the end of abortion would come to be now.

I so completely disagree with you and I’m upset you would publish this comment after my story. Shame on you. This is supposed to be a place of support. How dare you write something so full of judgment and lack of understanding? Seriously. How DARE you?

I’m so sorry for your loss. Please remember you are not alone. You are an amazing mum who did what any mum would do and that is to make the decisions we believe are best for our children. Sending you love and strength in the years ahead xxx

Julie, that’s not a kind, loving thing to say to someone who’s just lost a baby in a terrible way. This is not the right venue to vent your political frustration. Mel, I’m so sorry for your loss. I can’t imagine the pain of having to make the choice you did. I didn’t have a choice – my baby girl was born and died in September at 22 weeks, and I’m grateful that the decision wasn’t up to me. I ache for and with you, and pray for healing and comfort for us both.